I recently visited the Scheie Eye Institute in Philadelphia, where I volunteered for “The MacTel
Study: A Natural History Observation and Registry Study of Macular Telangiectasia Type 2” under the
Principal Investigator, Dr. Alexander Brucker. The evaluation took about 4 hours to complete, and
involved a full eye examination – refraction, visual acuity, slit-lamp exam (to check the surface of the eye, eye mobility, pupils, angles, eye pressures, etc.), dilated eye exam (to examine the back of the
eye/retina), blood draw for genetic testing, medical history and family history.
Then the second half involved a whole roomful of different equipment for imaging. Those tests included:
- Optical Coherence Tomography (OCT) scans (takes cross-section pictures of the back of the eye/retina to
measure the thickness of each layer) - Fundus Photographs (color images of the retina)
- Fluorescein Angiography (“the dye test” – fluorescein dye is injected into the arm and photographs are taken
of the inside of the eye as the dye moves through the blood vessels). This dye turns your urine the color of a
bright yellow highlighter for a day, but hey, now I can cross that off my bucket list, right? 😉 - Fundus Autofluorescence (done on the OCT machine, just a different light used to image the retina)
Nothing was painful, just some extremely bright lights at points, and a whole bunch of hearing “keep your eyes open as wide as you can” and “now blink” 500 times throughout the course of the day. ☺ If you have
any questions please email me (Tami Murphy) at
[email protected]
Dear Fellow Deaterites,
I wanted to share my recent trip to Philly for an Eye Study with the family.
I was diagnosed with eye issues in 1991. It presented as Age Related Macular Degeneration but I was only 37 so they tagged it with “Early Onset “. I received treatment immediately which left me with some permanent vision loss but stable. It returned in my other eye years later and better treatments were available.
Ellen contacted me about a study linking MacTel with a Neuropathy. So Jan & I made a trip to Philly and, as usual, met a lot of wonderful people. The testing took approximately 4 hours and there was really nothing to
it. By the end of my day the specialist diagnosed me with MacTel instead of
macular degeneration. Fortunately the treatment is the same so I am continuing my current regimen.
I have always felt the more doctors that look into our condition… the better and I would encourage any family members to take part. They said there are different testing places all over the country so once you make contact you can find the one closest to you.
Good luck